Parents as experts: the position of parents of children with profound multiple disabilities

Background Parents of children with disabilities are increasingly considered as experts in the field of care. Their expertise can deliver an important contribution towards planning their child's care and education. The law is increasingly taking this factor into consideration. On the one hand, parents already possess an abundance of know-how; on the other, they still have to increase their knowledge and sometimes their skills too.

Aim The purpose of this study is to demonstrate the supposition that co-operation between parents and professionals must meet certain criteria if parents are to receive a proper chance of using their existing knowledge, while at the same time adding to their skills.

Design A questionnaire was sent to 723 parents of children with profound multiple disabilities enquiring about their relationship with the professionals at their child's school for special education. Subsequently, for one group of parents, a method that recognizes the parents' expertise and assigns them a formal role was introduced. For the other group, no change in method occurred.

Results The results demonstrate that parents regard co-operation in a favourable light. Comparing both groups after a year, the expected effect of the method (a better rating of the co-operation by the parents) could not be demonstrated. This is probably a result of a problem with the questionnaire used in this study.

Conclusion Other studies, however, appear to support our supposition.